Today we had our appointment with a different pediatric gastroenterologist to get a second opinion on Jonathan. This doctor works at Children's Hospital in Denver but regularly sees patients down here. As I've mentioned before, we sought a second opinion because it's something good to do but also because things haven't been moving along fast enough.
When we first met the new doctor I made it clear that we were here for a second opinion and looking to move forward with some testing so that we could confirm or rule out what was going on. Up to this point we haven't felt that we've actually determined what the root problem really is. I know we're trying to get Jonathan fed, but it's entirely possible that we could also rule out a lot of other issues at the same time. We've been wondering why we haven't moved forward all this time with testing, the feeding clinic, and other options.
We were impressed by the visit. Dr Waasdorp (a woman), was a much better communicator and explained many things to us. We have a followup appointment with her in eight weeks, so depending on how everything goes we could conceivably start working with her office instead. The outcome of the visit was very pleasing to us. Without going into too many details about the appointment, we've been scheduled for multiple tests in the coming weeks. In my opinion, the tests that we're having done should have been addressed at the very beginning. Although it's unlikely that Jonathan has something else major going on based on symptoms, we have never actually confirmed the assumptions with testing.
Since I am writing this a few days after the appointment, we've already tested Jonathan for Cystic Fibrosis. On Thursday of this week Stacey took Jonathan down to Memorial Central for a couple of hours to complete the test. As I mentioned above, the likelihood that Jonathan has CF is probably very low, but lack of growth is a main symptom associated with CF. One would think that this should have been ruled out upfront, but it hadn't been addressed until this point. The test method was actually very interesting. CF can be tested through our sweat. They essentially hooked up two electrodes to Jonathan's underarm on his forearm, and stimulated the sweat glands with an electrical current. They then put a patch over the area that contained a small tube that collects the sweat (like a large bandage), and then Stacey walked around the hospital with Jonathan for about an hour while his sweat was collected. We should know the results sometime early next week.
The other issue we addressed was malabsorption. This simple test involved us giving the lab a stinky diaper. Although Jonathan's diapers haven't been showing signs of obvious malabsorption, it's still possible. I recall reading something where a very small percentage of malabsorption cases can only be seen under a microscope and confirmed with testing. Although it's unlikely, we never actually tested for it in the past. If Jonathan hasn't been absorbing either fat, protein, and/or carbohydrates correctly, then that would obviously affect his growth. The good news is that malabsorption is simple to treat - all we would have to do is orally give him the enzymes that his body isn't producing and that should solve the problem. We'll find out the results of this test early next week too.
At the end of next week we're going to head back to Memorial to repeat the gastric emptying test that was done when we were in the hospital last spring. In the past we've asked Yazdi if we could repeat this test because of many reasons. He didn't feel like it was necessary, but we disagreed. The main assumption that we're basing our treatment on right now is that Jonathan's gastric emptying time is borderline normal. That's fine, except that when we did the test in the hospital Jonathan was just getting over being very sick involving his GI system. Secondly, we're not quite sure (can't remember exactly) whether or not Jonathan had already been given Reglan before the emptying test. We think he was, and since that drug is designed to speed up his system, it would mean the test results would be effectively inaccurate and would not have done under the appropriate circumstances. Repeating the test while not on any drugs and healthy should provide a more accurate result. If it confirms the first test, then we can rest assured. If things come back slower then before, then we can address the real issue moving forward instead of what we have been doing - operating with incorrect information. In the short term, if his system comes back too slow, Waasdorp said she would give us a prescription that should help and we can address that issue instead of assuming it's something that we should be able to work with.
The fourth test, schedule in two weeks, will be an upper GI and small series study. The link has a very good summary of the test. This test like the gastric emptying test, also involves swallowing something like barium and then watching what happens on an x-ray as is moves through the stomach and small intestine. An abnormal result can identify all sorts of things, including issues in the stomach or a narrowing of the "drain plug" at the bottom of the stomach, but also intestinal issues such as malabsorption, swelling or irritation of the small intestines, and tumors/ulcers. I'm glad that we're finally starting to examine these functions of the small intestine considering Stacey's family history with related issues like Crohn's, Celiac, etc.
Given all of these tests, we'll be a lot more informed about what the real problem really is. The final result from the appointment this week is that we're going to start the feeding clinic in March. We need to start the process of Jonathan eating on his own. As I've mentioned before, we'll work with him until he can eat enough on his own during the day and we'll just have to feed him at night. Eventually he'll be able to eat enough of the right foods on his own and we can stop using the pump altogether. Additionally, we'll have individual and groups sessions at the clinic, so we'll get to meet some of the other parents out there that are dealing with the same issues we are. I'm excited about Jonathan learning to eat on his own, since that will be the end of the feeding pump and tube. While there, we'll learn what he likes to eat and what would be an appropriate diet considering his issues and allergies.
We're very happy that we sought out a second opinion. Even if nothing comes back we'll at least know for sure what we're dealing with. It's time to start moving forward and we're glad that we found a doctor that agrees with us on this topic.